As someone whose special interest is biology, it is awesome to know that the brain I was given is somehow different from most, but unbelievably frustrating to have the details of how said brain is different be kept in the dark.
By Baylie Nixon
I was at a loss for what to write this month, debating between writing more about Vienna, or expressing some emotional difficulties that come with being on the spectrum. But then something appeared on my Facebook feed, something that made me think to write about the science of autism and why I think it’s important to pursue, but also have caution moving forward. I am incredibly curious as to how the brain works, especially if we as a society are starting to accept the diversity of abilities the brain has to offer. But I also know that there is some hefty controversy with autism research; we don’t want the pursuit of knowledge to be corrupted by a desire for eugenics.
For better or worse, there have been several attempts in research to understand the autistic brain, most of them leading to contradictory or inconclusive results. As someone whose special interest is biology, it is awesome to know that the brain I was given is somehow different from most, but unbelievably frustrating to have the details of how said brain is different be kept in the dark. I like to know how things tick. I also like to know how to use things to the best of their ability. The sense of identity this wiring brings me is only part of the reason I don’t want to be cured. Another reason, and I’d argue this is the biggest reason, that I don’t want to be cured is because of the several abilities I know I do have. I feel there’s a huge risk of throwing the baby out with the bathwater if I were to change my neurology that drastically. I’m not, however, against the treatment and possible cure of mental illnesses that cause immense suffering to the person, regardless of how their social environment accommodates for them.
The line between neurological difference and mental illness in need of cure is incredibly blurry and individual. But I found a good guideline to follow is this: If society changes, and becomes more accepting and accommodating, is the person’s quality of life still hindered? Because I know that no matter how much progress society makes, depression will still leave me feeling depressed. However, I can already tell that living in a more autism-friendly environment allows me to function so much better than before.
In spite of the fears I have about the potential consequences of autism research, my thirst for knowledge drives me to support the efforts scientists make to better understand the autistic brain, and the brain in general. The post that appeared on my feed described skin cells taken from volunteers, some of them autistic, turning them into stem cells, and then further turning them into neurons. Apparently, the neurons from the autistic subjects developed faster than the controls. I don’t want to cover any more details than that because I don’t want to spread any misinformation. This is the kind of autism research I happily support. The autism research that I question more heavily is the genetics of autism. On the one hand, I find it super fascinating to know how genes play a role in something as complex and personal as this, but on the other hand, a misinformed and fearful public could use this information to wipe out future generations of autistics.
I believe the solution to autism acceptance is not through the cessation of research, but through the continued efforts of social progress. We’re living in an age of information where science abounds, and adapting to it is, I think, the best course of action. We’re also living in a very complicated age where there’s more debate and contemplation of what it means to live in a just and equal society. Minority groups that were once considered “invisible,” but oppressed all the same, are now in the forefront of activism. It is not unreasonable to believe that science and acceptance can coexist because it appears that it’s already starting to happen within the LGBT demographic. Now, as someone who is straight and cisgender, I can’t really speak for the LGBT crowd. I can, however, mention that being gay and trans used to be classified as psychiatric disorders. Yet because of successful activism opening the minds of the public, that is no longer the case.
The success of LGBT activism hasn’t stopped research from trying to better understand how and why people identify the way they do. One example concerns brain scans of transgender subjects, which revealed that their brains resemble their preferred gender over their assigned gender. This kind of research seems to be very supportive, rather than threatening, to its respective demographic. This is the kind of research that I hope to see being directed towards autism; research that cultivates understanding, rather than division.
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My name is Baylie Nixon, I am 24 years old, and I am currently living with my family while I volunteer for an organization called Living Opportunities and study in post-bacc school. I am on the autism spectrum, diagnosed with Aspergers before the DSM V was published, and have been a strong advocate for autistic inclusion since I was a junior in high school. My activism really took off during senior year of high school when I did my senior project on neurodiversity, and then later in college I was in charge of a neurodiversity club for a year.
I recently graduated from Oregon State University with a BS in Pre-Clinical Lab Science, and I am currently enrolled in further education in order to be certified as a medical technologist. I have lived in Southern Oregon for half my life, while also having lived in Forest Grove to go to Pacific University for a couple years, spending another couple back home at Southern Oregon University, then finally finishing my bachelor’s in Corvallis. I am absolutely in love with the biomedical sciences, and am excited to put my knowledge and passion to good use. I am also an Etsy jeweler, my shop is called “Bao Treasures,” and its logo is a rainbow bird. I have been making jewelry for roughly half my life.
I like you am 100% against the very idea of a cure for autism, but I have also contributed to a number of research projects, when I am convinced that the researchers are trustworthy and are not actually looking for a cure. I recently made public the reason for a very rare refusal (obvious dishonesty on the part of the researchers): https://aspi.blog/2019/01/15/warning-against-a-cambridge-university-research-project/
Nicely articulated article that expresses my concerns about change too. Much more research is needed, and as we know, you get what you get….At this time, I’m interested in stomach bugs and the toxic wastes they produce like propryonic (sp?) acid, which when injected into lab rats renders them anti-social. How do gut bugs get into the brain? The vagas nerve could be one route.
A very well-written post!
My only quibble with what you say is your statement that “we don’t want the pursuit of knowledge to be corrupted by a desire for eugenics.”
IMO this shows a misunderstanding of eugenics, which Google defines as “the science of improving a human population by controlled breeding to increase the occurrence of desirable heritable characteristics. Developed largely by Francis Galton as a method of improving the human race, it fell into disfavor only after the perversion of its doctrines by the Nazis.”
IMO the key issue regarding eugenics is simply a debate over what “improving” means. Anyone short-sighted enough to equate “improvement” with “conforming” to any single standard should never be allowed near any child, much less a genetics lab. OTOH, the issue of who is allowed to define “improvement,” or even “improvement” of their own offspring, is a very tricky question that I touch upon in my near-future story, “Sins of the Fathers.”
In the very near future, parents will be able to employ genetic therapies to design their children. Some deaf parents will want to select for deaf children, some “Aspies” will want to select for Aspie children. Before then, IMO we need a robust debate about who will represent the possibly conflicting needs and desires of parents, children and society regarding what we will no longer need to leave to chance.
The healthcare and science industry all seem to forget that autistic people are the next step in the human evolution. So it’s in humanity’s best interest not to cure us.
An Excellent article, one of which I do not take issue with the eugenics fear. I agree with it. If we look at what has happened to the prevalence of babies being born with Downs Syndrome, why are there less? Because there is genetic testing and young mothers who think how horrible it would be to have a child like that. So, the answer is to not have that child. If genetic testing were available to rule out Autism how many would choose to have this test and end a pregnancy? Many individuals, those who do not really understand those of us in the spectrum would have a knee jerk reaction, that being able to not make a child undergo Autism is a good thing. I and my son are not a disease to be cured. I raised him to understand we are a difference not a disability. That our difference can be good, if not hard. I for one think living in a world with only neuro typicals would be both boring and lack many creative and innovative things. Learning to live with the vulnerable and the different in our society makes us better not just different.
Are we really the next phase in humanity, or an ancient phase going back to our Denisovan ancestors? New Dawn magazine examines evidence which suggests that the brains of our Denisovan ancestors (from Europe and Asia) were wired very much like ours, and apparently they excelled at shamanic journeying, divination, and healing. There’s something about our imagination that works for us. If we accept that our imagination is our divine ability to create, we may need to develop that extremely potent ability whereby we imagine our problems away by mentally creating a reality that we want, instead of one that has been imposed on us? Imagination gets us moving in a direction we want, instead of being stuck in a situation we find ourselves in.
Many autistic people are sick of the so called “neuro diversity” aspies and do gooders, on the mildest end of the spectrum who have hijacked what is a serious and life debilitating condition, (possibly to cover for their own social inadequacies) and believe they have the right to dictate to science and impose some kind of 21st century politically correct inquisition.
I wear specticles and would dream of talking on behalf of blind people, which is kind of what these neuro diverse lot do.
Autism destroys lives and steals kids’ futures like a thief in the night, a cure is needed.
I’ve an idea if you like your autism don’t get cured if one becomes available, just like if you like being male don’t have a sex change, wow what a thought!
I am not a do gooder who thinks that not having something that effects me every day and has caused much pain and grief in my life is not serious. The problem I have with a Cure is that currently the only way to cure and reduce the number of individuals with ASD is to keep them from being born. I do not have faith in the Scientific community to come up with a way to fix genetics to prevent ASD from ever happening. We are so far from that. I am 50 I have lived through being wierd and rejected never being understood by other girls and women and most people in general. I have lost jobs over my ASD and struggled with many tears for my young adult son and his ASD. Has Autism stole his future or just made it take a different path. When He 3 as I sat waiting for him at speech therapy at a place that specialized in treating children with neurological issues I would be so thankful each time when we left and I saw children in wheel chairs and curved spines, missing limbs, serious deformities that this was all we had to deal with. That yes my son had a lifetime of struggles ahead of him, but he could run and play, he did not have a colostomy bag at 3. I don’t think it helpful to say I have hijacked anything. But a cure that means no life, that is not a cure.
If someone finds the cure for our constant struggles with the physicality of this world, I’ll be the first to take it. One of my most troublesome, and perhaps it’s a core autistic trait, is the sense of being out of place, ie: in the wrong physical world. My body works differently, as though it was designed for a different reality. Even though it doesn’t show it most of the time, I have endless struggles with the physicality here. It’s as if nature conspires against me at every turn. I hate paying attention to meaningless stuff like corporate labels, yet I find myself forced to do so by the dominant culture. Even a simple thing like putting on a T-shirt which I do every day, requires that I pay close attention to an otherwise meaningless little label, in order to put it on properly. Dealing with the endless physical minutae of life is like being pestered by annoying mosquitoes all day long. Is there a repellent spray for physicality?
Next time your in youtube type in severe autism and see the pain that individual is going through
That child will probably be dead before 40.
Many self harm, something seen in the animal kingdom, mistreat a dog by putting it in a small cage and it will start biting itself.
Anyone who thinks a child like that should not be cured in principal has to have a very sick and disturbed mind.
The problem with the autism diversity movement is that its composed of those at the other extreame of the spectrum, some married and in stable jobs etc.. their condition gives them a reduced empaphy (fact) so they are unable to see how others are feeling.
All thats ok until they started hindering scientific research and lay claim to talk for everybody
At the end of the day its about personal choice to be cured or not. No one has the right to dictate to science
Paul, I am not saying that scientific research should not be done, but I highly doubt the ability of science to find a true cure for Autism. I think that Baylie’s concern for eugenics is like mine that the first “cure” found will be not giving birth to Autistic children. And that is not a cure. When you accuse us of having a sick mind you are using an ad-hominem argument, one that shifts to the person from the topic.
The topic is the fear of not allowing individuals with Autism to even be born. This was I believe, Baylie’s concern with eugenics.
The other problem with your argument is that there are individuals that as young children perform self harming, and they stop them , (my older brother was one of them). Now of course you are going to point to those that don’t. But the biggest problem I have with your argument is that it is a choice to be cured. And yet if a cure is ever found surely it will be a cure in genetics, in other words it will happen pre- birth. So, who is choosing what. And my condition does not give me reduced empathy, it just generally makes it so I don’t see the need for empathy or I don’t know how to express it, usually in the way most people think I should. Actually because I am married and am a mom I have learned more empathy with time not less. The ways in which I allow my Autism to effect me daily has changed with time, growth and hopefully just being like everyone else a bit more patient and wiser as I age.
We are not dogs in cages and individuals with a disability of any sort deserve the right to be born and the right to define ourselves, but I do not worship at the feet of Science waiting for answers from people who don’t see me as a person but as a disease or mistake. So, I guess, now I am ready to be attacked by another ad-hominem.
My actual involvement in the formal field of science is very limited because my role as radiation safety officer was merely to ensure that those investigators who conduct research with nuclear materials, handle them safely (its called Health Physics). I watched and documented a lot of science being done, and broke it down into: pure science (for its own sake), commercial science (eg: cancer research), and bad science (for grant money).
Amateur investigators do “casual science”, and what separates us from formal professional scientists, is we don’t make a living at it, and we don’t carry the burden or obstacle of scientific dogma that constrains or limits our understanding of what we are observing. Because humans practice science objectively, our scientific solutions often lack or ignore the human component when it comes time to interpreting data and applying any knowledge extracted from an experimental process.
Our scientific observations intentionally ignore the human component in experiments to maintain objectivity, and as we are finally discovering, the human component changes everything in many energy related experiments. Our human energy is left out of many experiments, because it has been thought to be inconsequential, when in fact the human presence in the lab is significant in creating electromagnetic fields for example, as well as favouring certain types of reactions. The human effect on experimental results has not been studied with any serious effort, and so science has become a blunt instrument instead of a precise system that studies and comprehends the interplay of all factors and consequences.
To illustrate: I was diagnosed with Tourettes at 14, and became badly depressed at 15. Doctors applied a new scientific treatment called electroshock therapy to cure my Tourettes related depression. As you can imagine, it actually made things worse. This became known later as electrical lobotomy. To this day, the medical world has been unable to move past the fundamental mistakes it made many years ago, as it continues to harm patients with this barbaric treatment. Adherence to this controversial treatment has prevented research and exploration of non-harmful, more effective treatments.
Jill: I respect your view on abortion, although most occur in healthy pregnancies.
The problem your going to find though is a genetic test for autism / pregnancy is the low hanging fruit of genetics and its inevitable its going to happen.
We are in a space race with the chineese in the field of genetics / crispr. You may have read a couple of months ago of the chineese scientist who used crispr to stop HIV being passed from mother to child.
By preventing genetic research things remain at stage 1 just a test where a mother has no choice but to abort or bring up an autistic child.
By getting behind science you give potential for other treatments ( gene editing literally means editing whats there) allowing mothers to prevent severe autism from happening thus reducing abortion.
Paul, we will have to agree to disagree on some things here. And I also want to thank you for your respectful response. A good discussion especially in areas of ethics can not take place outside the realms of respect and general decency.
While we both agree that ASD can cause a lifetime of social impairment, being born with any impairment effects our social abilities. And looking at only the difficult parts of Autism takes our view away from what Autism can do in a person. Many of us in the Spectrum realize that we have unique abilities and talents because of our Autism. We often hold a different view than the world at large.
If your stage 1 were to be implemented it would effectively remove ASD from the gene pool. Thus causing a decline in research and development in both cures for ASD as well as the loss of alternative perspectives in many areas of Scientific research . It would also be a loss to the arts and our world in general.
However, this is all in a hypothetical conversation due to the fact that we don’t even know precisely where Autism is expressed within the human genome. Also due to the diversity of ASD we have no proof that there is more than one cause for ASD or that ASD presents itself within each persons genome at the same place.
These are a few of the reasons why I personally put little hope in a true cure. And instead feel research should focus on assisting Autistic individuals development and social integration. As well as helping those outside the spectrum to better understand our unique needs as well as gifts.
Wow! I got quite the responses on this article, I’m glad this has sparked such thoughtful discussion! For those who bring up the nonverbal end of the spectrum, I figured that’s where the controversy of this topic would be. It is not lost on me that I have several abilities and adaptations that I take advantage of to live a full and increasingly independent life. But refer to what I said in the post: If society improves, what is the person’s life like? Are they still struggling? I think that descrepancy can absolutely apply to the autism spectrum. And yes, I’m most concerned about the prenatal screening more than anything when it comes to eugenics and situations of the like. Hope this comment is helpful!